My words to live by – hope/optimism

I am hopeful that this daily blog will bring a bit of learning and opportunity to those in life that are both happy, and to those who struggle, to those who are in a good place or position who may possibly choose to reach out to some , or to those who need the reaching out.

It's very important to me to share with those who like my immediate family struggle on a daily basis, dealing with vasculitis which has led to renal failure, chemo, duchenne muscular dystrophy (which is terminal), autism traits, pancreas transplant, deafness, partial blindness, diabetes, mental instability and past addiction. These items are things that myself, my two girls and my two grandsons have dealt with or are dealing with now.

So in short my purpose for this blog is to show from our trials and tribulations, how I am still standing and breathing with the best sense of humor to date and only an Optimistic view of Hope for the future with my family. You see about 38 years ago I was told I wouldn't probably live to be 25.

Well I say Neener Neener 😊

Come share my journey, who knows you may be able to help someone you know, you may be able to help me, or I may be able to help you. Either way we get to know each other, laugh, cry and well, just live life.....

....Best Lorrie

The Journey Part 2, the new photo above is Lisa and her family

Again, I will be sharing bit and pieces of Lisa’s Journey along her road to hopefully full recovery, Lisa is in her mid 30’s with a 4 year old daughter. The day to day journals from her husband, the love and support from family, friends and co workers has made all the difference in both of their lives along the day. Here is part 2:

Tuesday, May 9th

Journal entry by Jacob — 5/9/2017

Lisa had a busy day today. This morning, she took and did fine on another breathing test. The frequency of the eye bobbing seemed to go down, but it was certainly still an issue today. She also received two units of blood. To try to figure out why she keeps needing blood, aside from all the blood draws, they did an endoscopy. The result showed some ulcers that were already starting to heal. The doctors had actually already suspected ulcers could be contributing to the blood loss, so she actually had already started the appropriate medicine for it.

Most of you know that Lisa is pretty feisty. I love that about her and cracked up when they initially went in for the endoscopy, she was not having any part of it. She clamped her mouth shut so hard that they had to break out propofol to get her to ease up. They usually don’t need to use that.

Cool stuff for today, I got a couple huge smiles. First one was when I delivered a kiss from Everly. Second was when I told her that the first finger she should start moving again is her middle so she could flip off the doctors when they hold her eyelids open. Side note, I understand why they need to do it and we have great doctors. She also was responding to some questions by moving her eyebrows.

Everly was feeling sick this morning and my mom and Aunt Sherri were nice enough to drive her home. From there I took her to the doctor and to pick up the resulting prescription. She is basically Lisa’s right hand man for everything. I was on speaker phone with the Costco pharmacy to ask when the prescription would be ready and (completely out of the blue) she says “Daddy I have something important to tell them, I need more fluoride tablets.” I asked them and she was right! She earned a Red Robin lunch for that. Needless to say I had to move the long term acute care tours to tomorrow.

Wednesday, May 10th

Journal entry by Jacob — 5/10/2017

Lisa’s eye bobbing increased in duration and frequency today. There were times where they lasted over an hour. The doctors continue to think the movements are related to a brain stem injury. This could be a couple things: 1) We know that she had some stroke damage on the left side of her brain stem, 2) We know that she had swelling which compresses and can damage the brain stem. I’m hoping for the second, without damage, with improvement the more that swelling goes down. Please pray for that and that she’ll start getting some functions back soon.

I visited the two long term acute care facilities today and Regional Hospital in Burien is really the only choice I feel comfortable with. It’s a great place and the staff seem really nice and knowledgeable. If she ends up going to an LTAC hospital, that’s where I’ll try to get her. Thanks to everybody who provided me with feedback.

Thursday, May 11th

Journal entry by Jacob — 5/11/2017

As long as all goes well with insurance and there are no emergencies, we will be moving to Regional Hospital tomorrow or Monday. It’s really exciting that Lisa is stable enough to move out of critical care, but scary at the same time. When she transitions to the long term acute care hospital, I’ll transition away from being with her every night and day (to take care of Everly and return to work). We’ll of course set up a calendar to make sure she has a steady stream of visitors and Everly and I will definitely be there a ton. Regardless, my anxiety level will be high. I’m comfortable with her being well taken care of at Regional, but just hope she knows how loved and supported she is.

As Lisa is about to leave this is also a good time to mention how amazing her care has been. We were so blessed to be at Swedish Cherry Hill when Lisa had her big stroke. The Neuro Critical Care unit was fantastic. Doctors, surgeons, nurse practioners, nurses, nurse assistants, respritory therapists, social workers, and everybody else we worked with were knowlegable and kind. Some folks even will be following this site to keep up on how Lisa is doing. I hope they’ll forgive me for any medical terminology errors. They really know so much, it’s tough to keep up!

Big news for today was really the move. I would add that the eye bobbing settled down significantly and that Lisa got a ton of rest. She did her breathing test for over 11 hours today and did great. For the googlers, these are called spontaneous breathing trials (or SBTs). The neuro surgeon removed staples and stitches from prior surgeries, which was very cool.

Friday, May 12th

Journal entry by Jacob — 5/12/2017

Lisa will officially be moving to Regional Hospital on Monday! Today the eye bobbing picked up a little, but it was still a good day. She stayed on SBT successfully all day. This bodes well for quickly getting off of the ventilator at Regional. We also got some great smiles today. There was a respitory therapist in the room and he said, “She looks just like an actress (insert back and forth with me and the nurses to figure out her name)…Olivia Wilde”. She got a huge grin which gave everybody in the room a big grin. Later I had her Pandora going and asked if she wanted to dance with me. She shrugged her shoulder, which was a new move, and I said “what is that supposed to mean?” That got a big grin too. I tried to get her to do the shoulder shrug again and she did it once, but not in front of the nurses.

More information to come on the move and lining up visits. Thanks for the continued support everybody!

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